Dementia is the leading cause of death for women in Australia, and the second leading cause of death overall — yet it often goes undiagnosed.
Paul Mahoney witnessed this first-hand during eight years as a disability and aged care case manager at Goulburn Valley Health in Shepparton.
He supported people whose cognitive decline went undetected — people who were living alone, some considered "cranky" by their neighbours, some estranged from their families.
Mahoney realised there was something more going on "underneath the surface" as he got to know those clients.
Where he could, he'd help them get an official diagnosis and thus access more support.
"[Dementia] is like a silent killer," Mahoney said.
Mahoney said families quite often couldn't cope with having somebody with dementia in their households.
"It does take an enormous stress on the carers ... Some families can do that, some families need a bit of extra support."
The budding scriptwriter realised he had never seen a story about undiagnosed dementia on screen that reflected the way a person experiencing cognitive decline could still contribute to society.
So he wrote Ruby's Choice.
The film, with two-time Golden Globe winner Jane Seymour playing the lead character Ruby, will be released across Australia this month.
Director Michael Budd said the script resonated with his own understanding of dementia.
"I was inspired to make Ruby's Choice having lost my grandma to dementia, and knowing even in her final years she had a lot to offer as matriarch of our family," Budd said.
There is little research on the prevalence of undiagnosed dementia in Australia.
About 50 per cent of mild dementia cases in the community remain undiagnosed, according to a 2011 study cited by Alzheimer's Australia.
Meanwhile, a 2021 study of six million Americans aged 65 and older suggested nine of 10 people with cognitive impairment consistent with dementia did not have a formal medical diagnosis of dementia or Alzheimer's disease.
Living with family helps
People living in larger households are less likely to die from dementia, according to a global study from the University of Adelaide published this month.
The research by experts in evolutionary medicine found communal living also helped to stave off the progression of dementia for longer.
The study examined variables in living standards and conditions in more than 180 countries for people aged 60 and above.
It found that independent of ageing, urbanisation, and GDP, large households protected against dementia mortality.
Co-author Emeritus Professor Maciej Henneberg said the finding showed the importance of meaningful human connection in reducing risks and the progression of dementia.
"We are actually not well-adapted to the contemporary trends of small families, personal space and individualism," Professor Henneberg said.
Challenging the stigma
Dementia Foundation for Spark of Life president Hilary Lee says a diagnosis is not always the best thing for someone living with dementia.
The health promotion charity she leads aims to facilitate a culture where people with dementia feel valued, loved and supported.
"An example might be during an appointment with a health professional, perhaps the health professional might talk with the partner or family member of the person who has the diagnosis instead of the person themselves.
"The perception is this person doesn't understand, but when in fact, they can actually understand more than we think they do.
"That's a hugely disempowering and invalidating experience if you're on the receiving end."
Ms Lee said while some people needed a diagnosis to access appropriate healthcare and support, others might be "actually quite happy not to have the diagnosis".
"I think it's important that each case is kind of considered individually but that supports are available for people who need it."
Philanthropist Sir Owen Glenn, the executive producer of Ruby's Choice and an honorary global ambassador for the Dementia Foundation, will donate his share of the film's profits to the charity.
